Risk Perception and Decision-making Processes in Candidates for Genetic Testing for Huntington’s Disease: An Interpretative Phenomenological Analysis

Abstract

This study is concerned with how candidates for pre-symptomatic genetic testing for Huntington’s disease represent their risk status and how they describe the process involved in their deciding whether or not to take the test. Transcripts of semi-structured interviews with five women offered testing were analysed by interpretative phenomenological analysis (IPA). The women find it difficult to conceptualize their current risk, and express reasons for a perceived enhanced or diminished risk based on, for example, number of previous family members affected or pre-selection of a likely recipient of the genetic mutation. The article then illustrates the contextual factors, such as family discussion or a key triggering event, which can influence the decision process of whether or not to take the genetic test. The study has implications both for psychological models of decision making and for the practice of genetic counselling.